Health and Literacy: A Review of Medical and Public Health Literature

Literacy has recently emerged as a key item on the research
agenda in medicine and public health. Researchers and practitioners are
grappling with evidence that the reading ability of the average adult falls well
below the reading level of educational materials, directives, forms, and
informed-consent documents commonly used in the health field. The threats to
effective communication and efficacious care have spurred interest in exploring
strategies for more effective communication. In addition, increased attention to
literacy may be driven by legal concerns for adequate protection of human
subjects and ethical concerns for patient autonomy in informed-consent
procedures. Methodological strides made since 1992, particularly in the form of
new tools for rapid literacy measurement, have enabled a number of researchers
to explore links between the literacy level of patients and health outcomes that
will have critical policy implications. These investigations can best be
undertaken through collaborative efforts between educators who understand the
learning process and health professionals who understand the protocols used in
health care and public health education. Findings will serve to enrich policy
and practice.

LITERACY IN THE UNITED STATESStudies of adult literacy in various regions of the United
States have been consistent in finding that a significant proportion of adults
have reading difficulties (Hunter & Harman, 1979). However, it was not until
the early 1990s that a rigorous study of adult literacy in the United States was
undertaken by the Department of Education (ED) at the direction of Congress. The
National Adult Literacy Survey (NALS), conducted in 1992 and the most
comprehensive source of data on literacy in the United States, interviewed
24,944 adults age sixteen and above (Kirsch, Jungeblut, Jenkins, & Kolstad,
1993; Chapter Four of this book). The NALS focused on functional literacy-those
literacy skills most commonly put to use in everyday activities. For example,
NALS reading assessments were based on newspaper stories to measure prose
literacy, employment forms to assess document literacy, and bus schedules to
measure quantitative literacy. Literacy skills were placed on a continuum, and
findings were reported for five levels, with Level 5 reflecting the highest
skills. Survey design and sampling rigor enabled analysts to estimate that more
than 90 million adults in the United States (46 to 51 percent of the adult
population) have extremely limited or limited reading and quantitative skills.
It is also estimated that 21 to 23 percent of adults would score in the lowest
of five levels and would have difficulty using reading, writing, and
computational skills for everyday tasks. Furthermore, the NALS study presented
the surprising finding that most of the adults performing at the two lowest
literacy levels did not see themselves as having limited skills, stating their
belief that they could read and write English well or very well. Many also
reported that they do not seek help with reading from others (Kirsch, Jungeblut,
Jenkins, & Kolstad, 1993).

NALS analysts note that those performing in the lowest two
literacy levels were more likely to be poor and to report having a physical or
mental disability or other health condition that keeps them from full
participation in work or home activities. The NALS findings also show that older
adults are more likely to demonstrate limited literacy skills than are
middle-aged or younger adults. In addition, the survey indicates that members of
minority populations, especially those for whom English is a second language,
are more likely to perform in the lowest two literacy levels. African American,
American Indian/Alaskan Native, Hispanic, and Asian/Pacific Islander adults were
shown to be more likely than white adults to have limited literacy skills
(Kirsch, Jungeblut, Jenkins, & Kolstad, 1993; Reder, 1998). The population
characteristics of those scoring in the lowest literacy skill groups overlap
with those identified at highest risk for health problems.

LINKS BETWEEN
EDUCATION AND HEALTHEducation, occupation, and income are commonly used markers
of socioeconomic status and are strongly correlated with health. Healthy People
2000, the U.S. Department of Health and Human Services (DHHS) report of national
health promotion and disease prevention objectives for the nation (U.S. DHHS,
1990), reported that people living in poverty have limited access to health
promotion and disease prevention programs and to curative services; are often
subject to greater environmental and occupational exposures; and have limited
options in education, housing, and employment, all of which are often
substandard among those with limited incomes. Consequently, Healthy People 2000
highlighted the need to reduce the disparities in health between the more
advantaged segments of the population and those groups that are disadvantaged
economically, educationally, and politically. Commenting on the body of evidence
establishing a strong link between socioeconomic status and health, Blane (1995)
noted the "striking consistency in the distribution of mortality and morbidity
between social groups. The more advantaged groups ... tend to have better health
than the other members of their societies."

A report of national trends in health statistics,
Socioeconomic Status and Health Chartbook: Health United States, 1998,
highlights a substantial body of research findings relating life expectancy as
well as lung cancer and heart disease rates to family income. Similarly cited
are numerous studies clearly demonstrating that death rates for chronic
diseases, communicable diseases, and injuries are all inversely related to
education for men and women (Pamuk, Makuc, Heck, Reuben, & Lochner, 1998).

Educational Attainment and HealthEducational attainment has become the most convenient and
commonly used indicator of socioeconomic status, and the association between
years of schooling and health is well established (Elo & Preston, 1996;
Krieger, Williams, & Moss, 1997). Winkleby, Jatulis, Frank, and Fortmann
(1992), suggesting that education is the most judicious socioeconomic measure
for use in epidemiological studies, hypothesize that education may protect
against disease by influencing lifestyle behaviors, problem-solving abilities,
and values. Ross and Wu (1995), demonstrating a strong association between
education and health, explored three explanations for this association and
hypothesize that education influences work and economic conditions,
social-psychological resources, and a healthy lifestyle. Although the
demonstrated evidence of the association between health and education is strong,
the explanations for this association and the underlying mechanisms have not
been extensively studied.

Literacy and HealthA growing number of inquiries have focused on direct measures
of literacy rather than on years of schooling to explore the links between
literacy skills and health. Research studies in education and adult literacy
indicate that literacy influences the ability to access information and navigate
in literate environments, has an impact on cognitive and linguistic abilities,
and affects self-efficacy (Snow, 1991; LeVine et al., 1994; Dexter, LeVine,
& Velasco, 1998; Comings, Smith, & Shrestha, 1994; Smith, 1994; Parikh,
Parker, Nurss, Baker, & Williams, 1996; Baker et al., 1996). Literacy is
sometimes measured in terms of comprehension skills, vocabulary, and the ability
to communicate effectively across a wide variety of contexts (often discussed in
terms of formal language skills). Formal language is closer to written language
and can be heard in public announcements and speeches. It tends to be
impersonalized and makes use of long utterances, complex sentences, and a
standardized vocabulary. Estimates of formal language skills include noun
recognition tests (Snow, 1991; Dexter, LeVine, & Velasco, 1998). Overall
formal language relies on grammatical structure to convey meaning, unlike
everyday talk, which may make use of gestures and pauses and assumes a common
context (Snow, 1991; Dexter, LeVine, & Velasco, 1998).

In medical care settings, a patient's oral language skills
are related to his or her ability to describe symptoms and can subsequently
affect the practitioner's ability to diagnose. For example, studies have
indicated that a physician's assessment of a patient's health history or
test of a patient for dementia may be affected by the patient's liter-acy
status (Weiss & Coyne, 1997). Furthermore, the patient's oral
comprehension abilities may curtail his or her dialogue with the physician or
ability to comprehend oral instructions.

Patients' literacy directly influences their access to
crucial information about their rights and their health care, whether it
involves following instructions for care, taking medicine, comprehending
disease-related information, or learning about disease prevention and health
promotion. Because consent procedures contain complex legal and medical jargon,
a patient's literacy may influence his or her opportunities for inclusion in
research and exposure to a variety of procedures. In addition, less literate
patients with chronic diseases may be less well informed about the basic
elements of their care plan (Ladd, 1985; Baker, Parker, & Clark, 1998).
Furthermore, literacy levels may directly affect access to care. For example,
difficulties in completing registration forms or applications for insurance
coverage may delay the procurement of needed medical services (Baker et al.,
1996). Finally, illiteracy or low literacy, which is often accompanied by
feelings of embarrassment or shame, may diminish a person's capacity to
express his or her concerns in our highly literate health care environment
(Parikh, Parker, Nurss, Baker, & Williams, 1996).

BARRIERS TO HEALTH COMMUNICATIONMost of the medical and public health literature mentioning
literacy focuses on assessing the readability levels of materials used in health
care settings and for health promotion purposes. Some studies assess the
readability of materials targeted at specific diseases, such as cancer or
diabetes, and others take a broader approach, examining a specific type of
material, such as patient package inserts or materials frequently used in
institutional settings for emergency department discharge instructions or
informed consent. Despite the many kinds of health-related materials analyzed
for readability, a clear trend emerges from the literature: too often, the
literacy demands of the material exceed the literacy abilities of the reader-that
is, most adults in the United States.

The Reading MaterialsMaterials assessment studies clearly document that many
health promotion and patient education materials, patient rights and
informed-consent documents, as well as directions for medication or self-care,
are not easily accessible to the average adult. The literature shows evidence of
continued efforts to assess patient information materials and ensure that the
level of literacy required for comprehension is appropriate (Doak & Doak,
1987; Meade & Byrd, 1989; Spadero, 1983; Daiker, 1992).

In spite of the fact that many layout and design
considerations affect readability, most assessments of health materials in the
literature apply readability formulas that are designed to assign rankings to
written materials and yield a score of reading difficulty based on a specific
grade (Klare, 1984). Among the measures of readability commonly referenced in
the literature are the SMOG Readability Formula (McLaughlin, 1969), the Flesch
Reading Ease Formula (Flesch, 1948), and the Fry Formula (Fry, 1977), as well as
a variety of word processing programs such as Correct Grammar (Basara &
Juergens, 1994), Right Writer (Glazer, Kirk, & Bosler, 1996), and Grammatik
(Davis et al., 1993b), all of which produce an overall grade-level assessment.
They are most commonly based on word length and sentence length or sentence
complexity, although formulas vary and they yield somewhat different reading
levels. These formulas are designed to assess materials organized in paragraphs
but do not measure readability for materials in other formats, such as graphs
and charts, both of which are frequently used to present health facts. The
assessment tool that Mosenthal and Kirsch (1998) developed provides a mechanism
for measuring the readability of charts and similar documents. These can be
scored on five levels of complexity and given a corresponding grade level. The
use of this tool has not yet been reported in the medical or public health
literature.

Patient package inserts, which contain essential information
about a medication, its use, and potential side effects, were among the first
patient-oriented materials to be assessed (Pyrczak & Roth, 1976; Pyrczak,
1978; Smith & Adams, 1978; Eaton & Holloway, 1980). Certainly as
self-medication with nonprescription drugs and direct-to-consumer advertising of
prescription drugs become more common, the readability of these inserts becomes
even more important (Basara & Juergens, 1994). As early as 1980 Eaton and
Holloway suggested that package inserts be written at reading levels between
grades 5 and 7. Yet in 1994, when sixty-three package inserts from
pharmaceutical companies, nonprofit organizations, and commercial vendors were
analyzed, the average readability was scored at grade 10 (Basara & Juergens,
1994; Ledbetter, Hall, Swanson, & Forrest, 1990; Swanson et al., 1990).

Assessments have also been conducted on various materials
addressing occupational health and safety (Auerbach & Wallerstein, 1987;
Koen, 1988; Bruening, 1989; Buckett & Sarri, 1991; Daiker, 1992; Wallerstein,
1992; Wallerstein & Weinger, 1992). Here too findings suggest that most
worker training and safety materials are written at a level well above the
literacy levels of the U.S. population and are not well suited to their intended
audience (Wallerstein, 1992). Noting the need for more appropriately written
health and safety materials, Wallerstein (1992) recommends that such materials
be developed collaboratively by occupational health professionals, literacy
educators, and language instructors.

The ReadersDeterminations of reading level are valuable only if they are
considered in the light of their target audience-in this case, the patient.
Indeed, a shift in interest from the reading materials to the reader is evident
in the literature and the development of reading assessment tools designed to
offer a quick means of scoring the abilities of patients and program clients.
The lack of health-related instruments, as well as the lack of time and other
environmental constraints, had restricted literacy assessments in medical
settings (Davis, Crouch, Wills, Miller, & Abdehou, 1990). The development of
tools intended to assess health-related literacy levels has enabled researchers
to examine the match more closely between the reading level of specific
materials and the reading skills of the intended audience.

ASSESSMENT TOOLS. The most commonly referenced health
literacy assessment tools are the Rapid Estimate of Adult Literacy in Medicine
(Davis et al., 1991, 1993b) and the Test of Functional Health Literacy in Adults
(Williams et al., 1995; Parker, Baker, Williams, & Nurss, 1995). Previously
a number of studies applied assessment tools commonly used in educational
settings, such as the reading recognition subtest of the Wide Range Achievement
Test˝Revised (WRATR), which requires a participant to read aloud lists of
words that become increasingly difficult. When ten words have been consecutively
mispronounced, the test is stopped, and a raw score, between 1 and 89, is
computed and converted into a grade equivalent (Jastak & Wilkinson, 1987;
Michielutte, Bahnson, Dignan, & Schroeder, 1992; Davis et al., 1994). The
WRATR does not measure comprehension but simply word recognition (Davis et al.,
1994). Its use is reported in several health-related studies (Jastak &
Wilkinson, 1987; Cooley et al., 1995; Davis et al., 1994; Hosey, Freeman,
Stracqualursi, & Gohdes, 1990; Larson & Schumacher, 1992), and it served
as a model for the Rapid Estimate of Adult Literacy in Medicine (Davis et al.,
1991).

For the Rapid Estimate of Adult Literacy in Medicine (REALM),
participants read from a list of 125 common medical terms, arranged in four
columns according to the number of syllables they contain. REALM takes three to
five minutes to complete and score. Raw scores can be converted to grade ranges
corresponding to lower elementary (below third grade), upper elementary (fourth
to sixth grade), junior high (seventh to eighth grade), and senior high school
levels (Davis et al., 1991). REALM performed well in identifying patients with
low reading ability, and a shortened version was subsequently developed and
assessed (Davis et al., 1993b). Analyses indicate that the shortened version,
taking two minutes, performed as well as the longer version in assessments of
concurrent validity.

The Test of Functional Health Literacy in Adults (TOFHLA) was
developed in English and in Spanish and uses actual hospital materials,
including the patient rights and responsibilities section of a Medicaid
application form, instructions for preparing for an upper gastrointestinal
series, a standard hospital consent form, and labeled prescription vials
(Parker, Baker, Williams, & Nurss, 1995). The test includes a seventeen-item
test of numerical ability and a fifty-item
test of reading comprehension applying the Cloze procedure, a tool to assess
reading comprehension that involves a process of deleting words from a prose
selection so that the reader must correctly supply the missing word.1 The TOFHLA
takes twenty-two minutes to administer, and developers suggest that it is more
useful as a research tool than as a clinical tool because of the time it takes
to administer (Parker, Baker, Williams, & Nurss, 1995), although a short
version, developed in 1998, may serve both purposes. The protocols for the
administration of both the REALM and the TOFHLA require an eye test and offer a
choice of font (or type) size.

Davis, Michielutte, Askov, Williams, and Weiss (1998) caution
that these tests cannot determine the cause or type of reading or learning
difficulty and thus cannot be expected to diagnose specific problems; they may,
however, prove useful in identifying patients for whom standard care approaches
and materials may not be effective. Researchers have not yet adequately explored
the experience of patients taking these assessment tests, nor have they examined
implications for patient dignity and subsequent treatment when literacy
abilities are identified and documented in medical care settings. The tools have
enabled researchers to measure reading skills in health care settings and
subsequently contributed to the explorations of the connections between health
and literacy.

HEALTH LITERACY LEVELS. Several efforts have been
undertaken to obtain a profile of the health literacy levels of specific patient
populations, and findings provide striking evidence of inadequate literacy
skills, validating the NALS findings in medical care settings. However, low
scores must not mask the inappropriate language and design of complicated
materials prepared for patients noted consistently in the literature.

Williams and colleagues (1995) used the TOFHLA to assess the
functional health literacy of 2,659 patients presenting for acute care at the
emergency care center or acute care walk-in clinic in two urban, public
hospitals. They report that a high proportion of patients were unable to read
and understand basic medical instructions. Well over a third of those patients
in the sample (41.6 percent) were unable to comprehend directions for taking
medication on an empty stomach, and a quarter of them (26 percent) were unable
to understand information on scheduling their next appointment. Of the 1,892
English-speaking patients in the sample, 35.1 percent had inadequate or marginal
functional literacy, according to the TOFHLA. For the 767 Spanish-speaking
patients, the figure was even higher (61.7 percent). Among the elderly (patients
sixty years old or more), the difference between English and Spanish speakers
virtually disappeared: 81.3 percent of English-speaking patients and 82.6
percent of Spanish-speaking patients had inadequate or marginal functional
health literacy.

The TOFHLA was also used in a study of 131 African American
patients with non-insulin-dependent diabetes in Georgia that was designed to
assess actual and self-reported functional health literacy (Nurss et al., 1997).
The functional health literacy level was scored as adequate in 47 percent of new
patients at one hospital diabetes clinic and in 25 percent of established
patients at three other clinics (a general medicine clinic and two satellite
medical clinics). Of those with inadequate health literacy, 43 percent denied
having any difficulty in reading. More than half (53.8 percent) of those with
inadequate functional health literacy said they did not usually ask anyone to
help them read medical forms, and only 29 percent reported asking someone
(usually relatives or neighbors) to help them read the written materials given
to them by the hospital. The authors note that such patients are least likely to
ask their physician for help, confirming reports from earlier studies indicating
that low-literacy patients are unlikely to identify themselves as such.
Diabetes-related complications combined with low literacy are likely to pose a
compounded threat to health, because diabetes self-management relies heavily on
printed instructions.

The Mismatch Between Materials and ReadersMost of the studies examining the match between the reading
level of health materials and that of those expected to read them document a
clear difference. Davis and colleagues (1990) noted disparities as wide as seven
gradations in their assessment of the readability of educational materials for
ambulatory care patients, patients in substance abuse treatment centers (Davis
et al., 1993a), and the parents and caretakers of pediatric patients (Davis et
al., 1994). Many studies in the literature focus on the disparity between the
reading abilities of cancer patients and the reading level of the educational
materials written for them (Cooley et al., 1995; Beaver & Luker, 1997; Foltz
& Sullivan, 1996; Meade, McKinney, & Barnas, 1994; Michielutte, Bahnson,
Dignan, & Schroeder, 1992; Doak, Doak, Friedell, & Meade, 1998). Cooley
and colleagues (1995) concluded that the reading levels of 27 percent of cancer
outpatients in one study were well below that of any of the thirty cancer
pamphlets analyzed with the Flesch formula. Similar findings are reported for
patients with diabetes (Hosey, Freeman, Stracqualursi, & Gohdes, 1990),
arthritis (Hill, 1997), and lupus (Hearth-Holmes et al., 1997). The reading
levels of groups of patients with these chronic diseases fell between grade
levels 6 and 10, while the readability of the materials designed for them fell
between grade levels 7 and 13.

Several studies examined patient education materials designed
for specific ethnic groups. Hosey and colleagues (1990) used the WRAT to measure
the reading ability of a group of American Indian diabetic patients and found
that although many patients scored at a reading grade level of 5, the diabetes
education materials scored at a mean reading grade level of 10. Guidry, Fagan,
and Walker (1998) note that less than half of the cancer education materials
specifically targeting African Americans reflected the culture of African
Americans and that few were written at a reading grade level for those with low
literacy skills.

A substantial number of studies report on both readability
and comprehension assessments of these documents, most of them deemed
inappropriate (Powers, 1988; Williams, Counselman, & Caggiano, 1996; Austin,
Matlack, Dunn, Kesler, & Brown, 1995; Delp & Jones, 1996; Jolly, Scott,
Fried, & Sanford, 1993; Jolly, Scott, & Sanford, 1995; Logan, Schwab,
Salomone, & Watson, 1996; Spandorfer, Karras, Hughes, & Caputo, 1995).
Williams and colleagues (1996) analyzed the readability of emergency department
discharge instructions with the Flesch and determined that about 45 percent of
patients would not be able to comprehend the instructions. Jolly and colleagues
(1993) found that a significant proportion of emergency room patients were not
able to answer questions about their discharge instructions, which were scored
between reading levels of grades 6 to 13. A follow-up study noted that patients'
ability to answer comprehension questions improved when the discharge
instructions were simplified (Jolly, Scott, & Sanford, 1995).

Readability formulas offer one indication of the
accessibility of informed-consent documents; however, as Mariner and McArdle
(1985) note, such measurements do not tell us about patient comprehension,
familiarity with medical terms, or previous experience with similar forms.
Cassileth, Zupkis, Sutton-Smith, and March (1980) examined comprehension and
recall of informed-consent documents and report that one day after signing a
consent form, only 60 percent of cancer patients understood the purpose of the
consent process and only 55 percent could correctly name one major risk of the
procedure. The authors attribute the limited recall to three major factors:
educational attainment, medical status, and the degree of care patients said
that they took while reading the form. Clearly consent documents and the
consenting process must be more closely examined.

LINKING LITERACY TO
HEALTH-RELATED OUTCOMESGrosse and Auffrey (1989) highlighted a body of evidence
linking literacy to health outcomes based on research conducted in developing
countries. International studies continue to yield insight into the mechanisms
through which literacy is linked to healthful action and health outcomes. These
studies tend to focus on women, for whom literacy levels are particularly low
because of traditional exclusion from schooling (Cochrane, O'Hare, &
Leslie, 1980; Comings, Smith, & Shrestha, 1994; LeVine et al., 1994). The
international literature is beyond the scope of the current review. However,
some of these studies, particularly those examining associations between oral
language and reading skills, are of increasing interest to U.S.-based research (Roter,
Rudd, & Comings, 1998).

Although research on the relationship between functional
literacy levels and poor health status is relatively sparse in the United
States, the appearance of a number of recent, well-designed studies offers hope
that more will follow. Conducting rigorous research that elucidates the
mechanisms through which literacy may affect health outcomes-health status,
services utilization, and behaviors-is vital to the development of effective
and appropriate strategies for improving the health of those with low or limited
literacy skills. Another valuable area of research concerns determining the
relationship, if any, between literacy and the cost of health care.

Literacy, Health Status, and
Utilization of Health Care Services

Weiss, Hart, McGee, and D'Estelle (1992) assessed the
relationship between literacy and health status in a randomly selected sample of
English-speaking adults enrolled in a publicly funded literacy training program
in Arizona. They found that the physical health of subjects with extremely low
reading levels was poor compared with that of subjects with higher reading
levels (reading levels were assessed through tests of adult basic education).
Even after adjusting for confounding sociodemographic characteristics, the
relationship between reading level and physical health remained. The study also
found a relationship between reading level and its measure of psychosocial
health, indicating that low literacy is also associated with poorer psychosocial
health.

TenHave and others (1997) examined the relationship between
literacy scores and a reported history of heart disease and diabetes. They found
that the proportion of participants reporting a history of heart disease or
diabetes was inversely related to literacy scores, as measured by an assessment
tool the authors developed for use in this project. In fact, the association
between literacy levels and heart disease-or any one of three conditions
(heart attack, hospitalization for heart condition, or diabetes)-remained
statistically significant even after adjusting for educational attainment.

Baker, Parker, Williams, Clark, and Nurss (1997) examined the
relationship of functional health literacy to self-reported health and the use
of health services. This cross-sectional, retrospective study included a sample
of 979 English-speaking patients presenting for nonurgent care at the emergency
care centers and walk-in clinics at two public hospitals, one in Georgia and the
other in California. At both sites, patients with inadequate functional health
literacy (measured with the TOFHLA) were more likely than patients with adequate
literacy to report their health as poor. In Atlanta, patients with inadequate
health literacy were also more likely than patients with adequate literacy to
report having been hospitalized in the past year, and this finding remained
statistically significant even after controlling for sociodemographic
characteristics and self-reported health.

Baker and associates' (1998) prospective cohort study of
958 English-speaking patients presenting for nonurgent care at an Atlanta
emergency care center and walk-in clinic examined the literacy level of patients
(using the TOFHLA) and its relationship to hospital admissions. The results of
the literacy testing itself are noteworthy:
35 percent of the sample population had inadequate literacy, and an additional
13 percent had marginal functional health literacy as measured by the TOFHLA.
Consequently almost half of the population studied would be unable or limited in
their ability to interpret appointment slips, directions for medication, or
hospital documents. Baker and colleagues found that patients with inadequate
literacy were twice as likely as were patients with adequate literacy to be
hospitalized during 1994˝1995. After adjusting for age, gender, race,
self-reported health, socioeconomic status, and health insurance status, the
researchers found that the relationship between low literacy level and higher
rates of admission remained at a level reaching statistical significance. On the
basis of their findings, the authors concluded that patients with inadequate
functional health literacy had an increased risk of hospital admission.

Literacy, Screening, and Early DetectionDavis and colleagues (1996a) assessed the relationship
between health literacy levels and knowledge of and attitudes toward screening
mammography with a convenience sample of low-income women from two outpatient
clinics in Louisiana. Low-income women are less likely to make use of screening
mammography and more likely to be diagnosed with breast cancer at later stages
of the disease. Since low-income women also have disproportionately lower
literacy skills than women with higher incomes, it is possible that in this case
health literacy level was linked to knowledge of mammography (which would
include knowledge of why women are given mammograms) and the decision to undergo
breast cancer screening. The study administered the REALM to 445 women forty
years of age or older who had not had a mammography in the past year. Lower
reading ability was significantly correlated with less mammography knowledge.
The authors conclude that limited literacy skills and lack of knowledge about
screening mammography may contribute considerably to the underutilization of
mammography by low-income women. This study makes an important contribution to
the field by having highlighted health literacy as an influence on knowledge
levels and screening decisions.

Bennett and associates (1998) assessed the relationship among
literacy, race, and stage of presentation among patients diagnosed with prostate
cancer. The focus of the study was 212 low-income men from two prostate cancer
clinics (in Illinois and Louisiana), both of which have equal-access systems
that treat primarily low-income individuals. The authors report that men with
literacy levels below sixth grade were more likely to present with
advanced-stage prostate cancer. Black men were more likely than white men to
present with advanced-stage disease; however, race was no longer a predictor of
advanced stage of disease at presentation when analysts adjusted for literacy,
geographic location, and age. The authors conclude that low literacy may be an
overlooked but significant barrier to the diagnosis of early-stage prostate
cancer among low-income white and black men. They suggest that the development
of culturally sensitive, low-literacy educational materials may improve patient
awareness of prostate cancer and the frequency of diagnosis at early stages.

Literacy and Chronic DiseaseWilliams, Baker, Parker, and Nurss (1998b) assessed the
relationship between functional health literacy (measured by the TOFHLA) and
knowledge of chronic disease in a cross-sectional survey of 402 patients with
hypertension and 114 patients with diabetes. Almost half (48 percent) of the
patients tested had inadequate functional health literacy levels. They were less
likely than those with high functional health literacy scores to know basic
information about their disease and essential self-management skills. Study
findings confirm that standard patient educational practices are insufficient to
overcome the barriers posed by inadequate functional health literacy. The
authors point out that much effort has focused on improving the quality of
written materials but that research is also needed on the use of oral and visual
communication to convey necessary medical information.

Williams, Baker, Honig, Lee, and Nowlan (1998a) also
published a study examining the relationship between literacy and asthma
knowledge and self-management skills. Asthma self-management was assessed by
patient demonstrations of their use of a metered-dose inhaler. In this
convenience sample of 483 patients, lower literacy levels as measured by the
REALM were associated with lower asthma knowledge scores and improper asthma
self-management. In fact, patient reading level was the strongest predictor of
asthma knowledge score and metered-dose inhaler technique in multivariate
analyses that adjusted for possible cofounders. This was the first study to
demonstrate that self-management skills are poorer among patients with limited
literacy skills, a finding with serious implications for the management of
chronic diseases.

Literacy and the Cost of Health CareGiven the established relationship between low literacy and
poor health, it is reasonable to hypothesize that low literacy levels might also
be associated with higher health care costs, yet little research has been done
in this area. Baker and colleagues (1998) found a statistically significant
relationship between functional health literacy and the likelihood of hospital
admission, one of the most costly health services.

However, a study that Weiss and colleagues (1994) conducted
on 402 Medicaid enrollees, randomly selected from an Arizona Medicaid program,
found no significant relationship between literacy and health care costs. The
authors detected a possible relationship between literacy and costs within a
particular subgroup of Medicaid patients, the medically needy, and medically
indigent patients, but there were too few subjects in the subgroup to draw
reliable conclusions.

STRATEGIES FOR
IMPROVING COMMUNICATIONResearch evidence documents health communication barriers for
people with low literacy skills and an association with poor health outcomes and
higher rates of hospitalization. Fortunately, research has begun on potential
strategies for addressing these barriers. A number of both research and
descriptive studies in the literature have included recommendations for
redressing the difficulties many adults face in attempting to use health-related
materials. Most of the literature focuses on educational materials, which, when
written at levels beyond the reading ability of most adults, limit access to
vital information.

Improving ReadabilityCommon sense indicates that those struggling with health
literacy issues would have less difficulty with materials that are written at
lower reading levels. However, research indicates that this strategy by itself
falls short of addressing the needs of those with low health literacy skills and
instead tends to benefit most those with higher skill levels who report that
they prefer such materials (Plimpton & Root, 1994).

Several research studies report on the efficacy of
specifically matching the reading level of materials to the reading ability of
the readers. Dowe, Lawrence, Carlson, and Keyserling (1997) randomized patients
of a general medicine clinic who had a current prescription for one of two
medications to a control group or to one of three experimental groups.
Participants in the experimental groups were randomly assigned to receive a drug
leaflet written at a low, medium, or high level of reading difficulty. Not
surprisingly, among participants who had less than a ninth-grade education,
those receiving the less complex materials were more likely to read the leaflet
than were those who received more complex materials. Further, among those with
an eighth-grade education or lower, knowledge scores were influenced by the
readability of the leaflet, with the higher knowledge scores resulting when they
received the less complex leaflets.

A similar study conducted by Ley, Jain, and Skilbeck (1976)
addressed noncompliance issues for anxious and depressed patients taking
medications. Patients were randomly assigned to receive one of three versions of
an information leaflet about their medications or to receive no leaflet at all.
The leaflets differed in readability levels, and the number of medication errors
was employed as an outcome measure. Patients receiving easy-to-read leaflets had
significantly lower medication error scores than those receiving the more
difficult leaflets. This study did not analyze the results by educational level
or literacy level; however, its findings are important to this discussion in
that they support the link between compliance with medication regimens and
readability (and presumably comprehensibility) of the information received.

The idea that simplification of emergency department
discharge instructions would improve patient comprehension was tested by Jolly
and colleagues (1995) with 423 adult patients who presented on randomly selected
days to the emergency department of a large, inner-city university hospital in
Washington, D.C. Comparisons were made against a historical control group (the
authors had assessed the standard discharge instructions in the past), and
analyses were done within educational groups using self-reported educational
level as the only indicator of literacy. Although the mean score (of correct
answers on five questions) for the current group was significantly improved over
that of the control group when discharge instructions were simplified, this
effect was seen only among patients in the group with a higher educational level
(beyond twelfth grade). Clearly the strategy of simplifying discharge
instructions for wound care and care of sprains and bruises was not sufficient
to improve comprehension in patients at lower educational levels and literacy
levels.

Sumner (1991) tested the effectiveness of matching patient
educational material to patients' reported educational level as an influence
on health behaviors. He found purposeful matching to have little effect. Sumner
concluded that the 31 patients in the intervention group receiving booklets
matched to their educational level were no more likely than the 213 control
group patients to engage in the desired health behaviors (obtaining a
sigmoidoscopy, a diphtheria-tetanus immunization, a cholesterol screening, or a
smoke detector).

Davis and colleagues (1998) compared two polio vaccine
pamphlets in a study of 610 parents who sought health care for their children at
one of three pediatric care facilities. Parents were randomly assigned to
receive one of two pamphlets, both written at a sixth-grade reading level. One
was the vaccine information statement issued by the Centers for Disease Control
(CDC), and the other was developed by the authors at Louisiana State University
(LSU) in an easy-to-read format. The REALM was used as the measure of health
literacy levels, and a structured interview elicited information about the
perceptions and attitudes of the parents toward vaccination and assessed their
comprehension of the pamphlets they had read. Parents at all reading levels
preferred the LSU pamphlet (76 percent versus 21 percent), and more parents
found it easier to read than the CDC pamphlet (58 percent versus 42 percent).
However, analyses by grade-level estimates indicated that the LSU pamphlet
improved comprehension scores only among parents reading on a seventh- to
eighth-grade level or higher; parents with the lowest reading levels did not
show improved comprehension (Davis, Holcombe, Berkel, Pramanik, & Divers,
1998). Findings indicate that the strategy of improving the readability of
educational materials by bringing it to the sixth-grade level is clearly
insufficient as a means of meeting the needs of patients with low literacy
skills.

Additional ApproachesInformed consent has been of key concern in a small number of
studies. Informed-consent processes ensure the protection of patient autonomy,
the most fundamental tenet of bioethics. Here the consequences of low literacy
have both legal and ethical implications. Titus and Keane (1996) examined
researchers' and clinicians' attitudes toward the importance of patient
knowledge and concluded that many researchers are far from proficient at
ensuring the informed consent of the subject. The authors note that too often
researchers use closed-ended questions, such as "Do you understand?" to
hurry the consent procedure and consequently may coerce subjects into
participating in studies. Taub, Baker, and Sturr (1986) suggest that
informed-consent procedures may be a considerable problem for elderly patients
with low education and, further, that simplifying words and sentences on consent
forms may not in itself lead to greater levels of comprehension. Earlier, Taub
and colleagues (1981) had examined vocabulary level and recall in a study of
eighty-seven elderly adults and found a direct relationship between the elderly
adults' vocabulary levels and their ability to recall consent information two
to three weeks later. In addition, researchers noted the benefits of corrective
feedback, throughout the consent process, as a means to improve comprehension.

One study compared the use of print materials (written at
fifth-to sixth-grade reading levels) with presentation of a videotape, each
containing the same information, on colon cancer. The effectiveness of the print
and videotaped materials was compared in a randomized study of eleven hundred
patients age fifty or older from a primary care clinic in Milwaukee (Meade,
McKinney, & Barnas, 1994). WRAT II scores were used to assess reading
skills, and subject selection criteria included the ability to speak and read
English. Colon cancer knowledge was assessed using pre- and posttest
questionnaires developed for the study. Patients were randomly assigned to one
of three groups:
(1) those to receive a booklet written at a reading level for grades 5 to 6, (2)
those to view a videotape that contained the same content as the booklet, or (3)
those to receive no intervention. Mean pretest scores were compared with mean
posttest scores, and improvements in knowledge about colon cancer were observed
for both the group receiving the booklet (23 percent) and the group viewing the
videotape (26 percent). Reading scores, assessed by WRAT II, were used to
stratify the experimental group into two groups. The first group consisted of
patients with higher reading skills (grade 7 or higher) and the second of those
with lower reading skills (below grade 7). No statistically significant
differences in score improvements were observed; knowledge levels improved with
the booklet and video for patients at both the higher and lower reading levels.
The authors conclude that printed materials written at low reading levels (grade
5 to 6) can effectively substitute for videotaped materials in clinic settings
without access to the more expensive audiovisual equipment. However, it should
be noted that this study required participants to be able to read English and
thus did not address the problem of achieving knowledge improvements among those
patients at the lowest levels of health literacy.

In another fairly small study conducted in 1996, Levin looked
at the value of symbols as a means of promoting healthy food choices in the
cafeteria at an urban work site. The intervention consisted primarily of placing
heart-shaped symbols next to targeted, low-fat entrees on the list of available
food choices. At the experimental site, sales of targeted, low-fat items (as a
proportion of total sales) increased significantly from baseline over the
intervention period of twenty-eight weeks. At the comparison site, no
significant differences were observed across the intervention period. The author
notes that one of the most positive features of this promotion is its
application to populations with low literacy skills, because it used no written
materials other than a poster with minimal words and relied primarily on a
single symbol to draw attention to recommended foods.

Roter, Rudd, Keogh, and Robinson (1987) examined the
effectiveness of an educational booklet developed by construction workers on the
topic of cancer and asbestos and compared this material with a National Cancer
Institute (NCI) booklet on the same topic. The subject pool consisted of five
hundred participants whose names were drawn randomly from each of the membership
lists of ten union locals. Half of the subjects received the workers' booklet,
and half received materials developed by the NCI; both groups received an
evaluation questionnaire. Although hampered by a low overall return rate (21
percent), the researchers reported that readers of both materials reflected a
high degree of awareness about asbestos and disease and recognized the benefits
of quitting smoking and the danger of asbestos dust. However, readers of the
workers' booklet had higher recall of recommended action; offered high ratings
for clarity, tone, and ease of understanding; and were more likely to report
that they would become more active in union health and safety issues.
Furthermore, the reading level of the worker-developed materials scored from
four to seven levels below that of the NCI materials. The researchers noted that
in this and other instances, material developed by members of the target
audience reflected their voice and their concerns (Rudd & Comings, 1994).

Delp and Jones (1996) studied the effectiveness of cartoon
drawings in a prospective, randomized study of patient comprehension and
compliance with discharge instructions. The study included 234 consecutive
patients who presented to the emergency department of a community teaching
hospital with lacerations requiring wound repair. Random assignment was used to
select 105 patients to receive wound care instructions illustrated with cartoons
and another 129 patients to receive release instructions without cartoons.
Analyses revealed that patients given the instructions with the cartoons were
more likely to have read the instructions, answer all wound care questions
correctly, and actually follow the instructions in daily wound care. Especially
noteworthy is the fact that even larger differences in comprehension and
compliance were observed between the two groups when analyses were done on a
subset of 57 patients with less than a high school education. Although this
study employed educational level as the only indicator of literacy, it supports
the idea of using cartoons to improve both patient understanding of discharge
instructions and compliance with medical advice among patients with low
educational levels and presumably lower literacy skills.

A community-based nutrition education program conducted by
the Expanded Food and Nutrition Education Program (EFNEP) was designed
specifically for low-literacy populations and assessed in a study with 134
participants and 70 comparison subjects (Hartman, McCarthy, Park, Schuster,
& Kushi, 1997). Formative research, including focus group discussions, was
used to develop the intervention with members of the low-literacy target group.
Literacy levels were assessed through the Adult Basic Learning Examination Level
II (ABLE), and all EFNEP participants whose reading abilities were below the
eleventh-grade level were asked to participate (more than 90 percent were
female). Although there are certain problems with the study design (for example,
the comparison group was significantly different from the intervention group in
a number of ways), the low-fat intervention designed specifically for this
low-literacy population was associated with significant improvements in overall
low-fat eating behaviors. This study provides partial support for the strategy
of engaging low-literacy participants in formative research (for example,
through focus groups) to develop interventions designed specifically to meet
their needs.

A hypertension control effort described by Fouad and
colleagues (1997) included an intervention program tailored to accommodate the
needs of a population with low literacy skills by employing visual teaching
methods, games with culturally sensitive concepts and examples, and incentives
to encourage behavioral change. The findings from this quasi-experimental study
indicate that the eighty-one intervention participants experienced a
statistically significant decrease in mean systolic blood pressure. Although
this decrease was greater from baseline to follow-up than that experienced by
control subjects, the difference (between intervention participants and control
subjects) did not reach the level of statistical significance.

Qualitative data are also available to guide the development
of strategies for addressing the needs of low-literacy patient populations.
Hartman, McCarthy, Park, Schuster, and Kushi (1994) conducted a focus group
research project with forty-one participants (mostly women) to evaluate an
education program promoting low-fat eating behaviors in a population in the
Minneapolis˝St. Paul area with limited literacy skills. The focus group
participants wanted simple, practical, and relevant information about what foods
to eat and how to prepare them. They considered lectures an ineffective way to
receive nutrition information, preferring instead to engage in hands-on
activities that allowed them to share ideas and experiences. Macario, Emmons,
Sorensen, Hunt, and Rudd (1998) conducted nutrition-related focus groups with
patients with low literacy skills who were clients from adult basic education
programs in the Boston area. One of the key findings from this project is that
patients with low literacy skills turned first to family members and friends for
health information. The authors note that effective nutrition interventions must
build on a patient's social networks, appear in a visually based, interactive
format, and be culturally appropriate.

TRENDS IN THE LITERATUREConnections between health and literacy have been of concern
to health educators for decades. Practitioners and researchers first turned
their attention to problems with written documents, examining the reading level
of drug inserts, informed-consent documents, medical care and medication
instructions, and general patient education materials. Legal, ethical, and
practical considerations are reflected in the many studies centered on the
assessment of materials, often accompanied by insightful suggestions for
reworking old and developing new materials and for dialogue and discussion.
Subsequently studies were designed to examine the match between a particular
population's reading ability and the reading level of health materials.
Overall, studies yielded consistent findings over time-that is, the materials
were written at levels inappropriate for the general public or for the specific
population groups for which they were designed.

Methodological strides in the 1990s led to measures of
literacy
as it relates to specific health information and related tasks. The TOFHLA
followed the general techniques of the NALS and validated the NALS findings
among clinic and hospital patients. Both the TOFHLA and the REALM offered
researchers rapid literacy assessments with high face validity for health issues
and concurrent validity for more general literacy assessments. Subsequently
researchers began to measure health literacy (defined as literacy skills related
to the vocabulary, materials, and directions used in health care settings) and
study the association between literacy and specific health-related outcomes.

Of the almost one dozen citations on literacy found in the
medical and public health literature in the 1970s, two focus on barriers posed
by low literacy, another two on methods for assessing and improving health
education materials, and the remainder on readability assessments of
health-related communications (such as the use of medical terminology and the
readability of directions on nonprescription drugs).

The literature of the 1980s represents a threefold increase
in literacy-related citations from public health and medical journals; the
citations are both more numerous and broader in scope. Out of a total of
thirty-seven articles, seven focus on general issues of literacy, comprehension,
and communication. A smaller group focuses on tools for assessing materials or
techniques for developing materials at more appropriate reading levels. The
majority of the articles report on assessments of written material related to
occupational health and safety, informed consent, hospital emergency department
discharge instructions, medicine, and patient education. Many of these articles
address patient education literature for a specific disease, and a few focus on
health education literature for specific population groups. At the close of the
1980s, Grosse and Auffrey (1989) authored the first review of literacy and
health status for the Annual Review of Public Health, which brought together key
international studies and provided evidence of a growing scholarly interest in
this area.

The number of citations available in the 1990s is evidence of
the burgeoning interest in health and literacy. The first half of the decade
alone produced more than one hundred citations related to health and literacy
concerns. Weiss, Hart, and Pust (1991) and Weiss and colleagues (1992) called
for research into the links between literacy and health. However, most of the
literature from the early 1990s reflects a continued interest in health
education instruction materials and medical forms. There is a continued concern
with the readability of informed-consent documents.

During the latter part of the 1990s, assessments of the
reading level of health-related materials (on informed consent, medical
directives, patient education) continued to account for most of the public
health and medical literature concerned with literacy. Numerous articles
published during this period continued to draw attention to the challenge of
developing valid informed-consent processes for surgical procedures and research
among patients with low literacy skills. The development of specific
health-related literacy assessment tools in the early 1990s advanced research
inquiries into the links between literacy and health outcomes. Studies in the
latter 1990s focused on health-related consequences of barriers encountered by
adults with limited or extremely limited literacy skills and offered insight
into issues of comprehension of basic medical instruction, management of chronic
disease, and knowledge of screening and early detection. Studies have
established that inadequate health literacy is associated with higher rates of
hospitalization, one of the most costly medical services.

IMPLICATIONS FOR
RESEARCH AND PRACTICEAlthough more research is needed, the studies to date
corroborate the findings from international health research indicating that
lower levels of literacy are clearly associated with poorer health and that low
levels of health literacy have a measurable impact on numerous intermediate
factors that influence health outcomes. Recent research also highlights the fact
that standard patient educational and care practices are insufficient to
overcome the barriers presented by inadequate health literacy. Additional
evidence is now available to awaken medical professionals to the urgent need to
address the challenge of communicating effectively with patients, many of whom
have limited or low literacy skills. Not only do such patients rarely identify
themselves as struggling with literacy issues, but those with inadequate
functional health literacy usually do not ask others to help them read
health-related materials or instructions. Furthermore, studies indicate that low
literacy can diminish a person's capacity to engage in fruitful interactions
with the care providers in our highly literate health care environments.
Findings from studies of patients in managed care organizations underscore the
financial and human costs of low literacy.

Research in the 1990s also began to focus on testing
strategies for meeting the needs of those with low levels of health literacy.
Especially noteworthy are efforts that engage patients with low health literacy
in the development of new programs intended to meet their needs better. These
studies and others employing formative research methods and marketing strategies
offer evidence of the influence of social marketing, with its focus on consumer
wants and needs, in the field of public health (Walsh, Rudd, Moeykens, &
Mahoney, 1993). When those with low health literacy are considered the target
group, a social marketing approach would suggest that at least part of the
challenge in effectively improving its members' health lies in developing a
product that better meets their needs. A health information brochure that is
written in an easy-to-read format or a chronic disease management educational
session centered on a demonstration of self-care skills each represents a type
of improved product for a low-health-literacy group. Participatory approaches
that engage members of the population of interest and formative research methods
designed to enable the clients or patients to attune appropriately programs or
materials designed by others support more efficacious outcomes.

Much strategic development work, beyond improving the
readability of materials, remains to be done. In medical settings, those with
low-health-literacy skills need to participate in formulating and testing new
strategies for improving their ability to communicate their concerns, their
comprehension of their condition and their self-management skills, and their
health behaviors. The education of health professionals needs to include
information on the high prevalence of inadequate functional health literacy and
its relationship to poor health and to incorporate training on how to be
effective in addressing the needs of low-health-literacy patients. At the same
time, the level of literacy skills demanded of patients must be modified.
Professional jargon in directives, forms, signs within health care institutions,
educational materials, and discussions must be more closely examined and
eliminated where possible.

The adult education setting is another critical area for
strategic development. Adult basic education (ABE) programs provide ready access
to populations with low functional health literacy, and both teachers and
students from these programs can be engaged in the strategic development work
(formulating and testing strategies) that must take place to address fully the
health-related needs of this target group. Work has already begun on the
development of cancer-related teaching modules for programs in ABE, English for
speakers of other languages (ESOL), and literacy programs. These and other
modules serve to improve language and quantitative skills, as well as to
increase health literacy, promote healthy lifestyle choices, and support
health-promoting community action. Such adult education curriculum development
should be expanded to include other health topic areas as well. The expertise of
education and literacy professionals is vital in crafting effective health
education and promotion strategies for those with low levels of health literacy,
as is the perspective of those with limited literacy skills. The field has
benefited greatly from the collaborations between adult education and health
professionals over the past decade, and further achievements can be expected by
expanding the partnering of these two fields.

There is a critical need for additional research that will
further explore the relationship between levels of health literacy and health
outcomes, as well as the relationship between inadequate health literacy and the
intermediate factors that influence health outcomes. The mechanisms through
which health literacy and health outcomes are connected are also in need of
further elucidation. For example, the connection between health literacy and
verbal communication has yet to be examined. In addition, strategies for
addressing the special needs of those with low health literacy need to be
developed and tested through well-designed research efforts with sample sizes
that are sufficiently large to draw meaningful conclusions. Much progress toward
weakening the association between health and literacy can be achieved if an
array of research-based strategies can be employed across different health and
educational contexts. Finally, the exploration of the relationship between
levels of health literacy and health care costs is just beginning in the United
States. It is expected to draw more attention in the future as the health care
system continues to face challenges of cost containment.

MODEL PRACTICES AND NEXT STEPSA number of exemplary projects illustrate the potential for
effective collaboration between professionals in education and in health fields.
The Health Team in Massachusetts, established in the early 1990s by the
nonprofit organization World Education, has brought together health and literacy
educators to address mutual concerns. Ideas resulting from discussions led to
the design of the Health Education and Adult Literacy Program (HEAL), a
collaborative effort of World Education, the Harvard School of Public Health,
and the Centers for Disease Control, which brings lessons on breast and cervical
cancer to adult learning centers. In addition, the team designed a program that
enabled adult education centers to develop health-related curriculum, programs,
and materials for adult learners. Such collaborative efforts supported the first
of a series of national conferences on health and literacy that set the stage
for cross-disciplinary discussions. Subsequently supported by a combination of
private and public funds, yearly conferences and working groups on health
literacy have served to engage researchers and practitioners from medicine,
public health, adult education, and governmental and private funding agencies in
the articulation of a research agenda (Giorgianni, 1998).

The Maine Area Health Education Center was instrumental in
forming another collaborative project in which health education and adult
education professionals were brought together, this time for a series of
training sessions on how to produce easy-to-read health materials (Plimpton
& Root, 1994). The materials development consortium involved a dozen health
agencies and a half-dozen adult education programs. These collaborators produced
dozens of easily reproducible, low-cost pamphlets focused on the Healthy People
2000 objectives, and a model for teaching oral communication skills to health
care providers who deal with low-literacy adults.

Collaborative work has been undertaken by public health and
adult education researchers at the National Center for the Study of Adult
Learning and Literacy (NCSALL), who are examining the topic of health and the
skills adults need in health care settings as a content area for adult
education. Research activities include interviews with adult learners and
surveys of state directors and teachers. Findings will set a foundation for
curriculum design, teacher training, and the development of laboratory sites for
outcome studies. An interview study and a national survey have been implemented
to engage adult educators in the process of exploring the definition and scope
of functional health literacy (Rudd and Moeykens, 1999; Rudd, Zacharia, &
Daube, 1998a; Rudd, Zahner, & Banh, 1998b).

Professionals at the National Cancer Institute and its Cancer
Information Service have spent a decade developing cancer education strategies
and materials to reach people with limited literacy skills, and they have been
collaborating in this effort with representatives from ABE programs (Brown et
al., 1993). The ABE and literacy networks provided the Cancer Information
Service with access to the low-literacy audiences who are often described in the
health literature as difficult to reach. The NCI has engaged in outreach efforts
to establish regional and community linkages with literacy programs and ABE
programs, and it has partnered with these programs in several states to create
teaching modules on cancer-related topics for use in ABE and literacy
curriculums. These modules are also expected to be useful in other settings
where low health literacy is common, such as senior centers and community health
centers.

A reflection of the NCI's leadership in this area is the
partnership it forged in 1992 with the AMC Cancer Research Center to establish
the National Work Group (NWG) on Cancer and Literacy (NWG on Literacy and
Health, 1998). The group's mission was to focus national attention on the need
for more effective communication with people with limited literacy skills and to
provide the NCI with recommendations for effective communication with this
target population. The group, which consists of professionals from the field of
education as well as health, among others, was in 1996 renamed the National Work
Group on Literacy and Health to reflect better the broader focus across health
areas (not just cancer). An article authored by the group highlights the
pervasiveness of low literacy levels in the United States, the relationship
between low literacy and health, and the need for improved communication between
health care providers and those with limited literacy skills (NWG on Literacy
and Health, 1998). The group also provided recommendations for addressing the
needs of patients who have limited literacy skills.

Two subsequent developments at the beginning of 1999 may set
the stage for additional collaborative research and policy development work well
into the next decade. First, Healthy People 2010, the next delineation of health
objectives for the nation, will include a section on health communication and
health literacy (U.S. DHHS, 1998). Second, a report from the American Medical
Association Ad Hoc Committee on Health Literacy for the Council on Scientific
Affairs reflects medicine's recognition of literacy and its role in health (Ad
Hoc Committee, 1999). Both developments bring health literacy to the national
agenda.

More such collaborative efforts between education and health
professionals are critically needed to address fully the needs of those with
limited health literacy skills. There is much to be gained from pooling these
areas of expertise as well as engaging those with limited health literacy skills
in forging and testing new strategies for meeting the communication,
educational, and health needs of this population.

Note

Concurrent validity was assessed by examining the correlation between
the English-language version of the TOFHLA and the REALM (r = .84, p <.001)
and the WRAT-R (r = .74; p <.001).

References

Ad Hoc Committee on Health Literacy. (1999). Health literacy report of the
Council on Scientific Affairs. Journal of the American Medical Association,
281(6), 552˝557.